Features

Autism clinical part 2: the hidden disability

06 December 2019

In the second of a two-part series, journalist Colleen Shannon takes a fresh look at Asperger syndrome, and asks how you can offer understanding and support.

People are becoming more aware of autism, and recognising the often extraordinary contributions that autistic people have been making to culture, science and technology, and our communities. That’s a welcome trend.

At the same time, we’re in danger of underestimating the obstacles that autistic people can face in everyday life. It’s difficult to think of a diagnosis that is as common as autism, which affects more than one in 100 people in the UK, yet is so unseen despite its profound impact (National Autistic Society (NAS), 2019).

In a widely reported study from Sweden, the life expectancy of an autistic person was 54 years, compared with 70 years for non-autistic people with otherwise similar characteristics. The leading causes of death were neurological disorders such as epilepsy, and suicide (Hirvikoski et al, 2016).

According to the research charity Autistica, children with autism are 28 times more likely to think about or attempt suicide. Autistic adults who do not have a learning disability are nine times more likely to die from suicide (Autistica, 2019). Research that has focused on people with a diagnosis of Asperger syndrome has found similarly worrying results and a strong link to depression (Cassidy et al, 2014).

The NAS says that connections between autism and mental health – and how to support autistic people – are still not fully understood and need further research.

Sensory overload can make it very difficult for an autistic person to interact with you – imagine holding a conversation while a fire alarm screeches

What’s the correct terminology?

The first step to reversing this situation – and to promote the positive life experiences that autistic people also have – must be better understanding. There is a lot to keep up to date with, starting with the terminology.

Traditionally, Asperger syndrome has been regarded as a form of autism where someone has average or above average intelligence, and fewer problems with speech (although they may have problems processing language). Someone with Asperger syndrome does not have a learning disability, but they may have specific learning difficulties.

However, it’s not always clear whether the term Asperger syndrome should even be used any more. For one thing, research has recently grappled with the troubling history of prominent autism researcher Hans Asperger, specifically his relationship with the Nazi regime (Czech, 2018).  

The most recent versions of the International Classification of Diseases (ICD-11) and the Diagnostic and statistical manual of mental disorders (DSM-5), the two main sets of diagnostic criteria for autism, no longer define Asperger syndrome as a separate diagnosis. Instead, people with these characteristics now go under the umbrella of autism spectrum disorder (WHO, 2018; American Psychiatric Association, 2013).

On the other hand, some autistic people identify with the term and choose to keep it.

The NAS says: ‘Autism is a spectrum condition and Asperger syndrome is a diagnosis within the spectrum. The overarching terms of autism or autism spectrum disorder (ASD) are now used more frequently than Asperger syndrome, in line with changes to the main diagnostic manuals.  

‘All autistic people have difficulties with communication and social interaction. A clinician might describe someone as having Asperger syndrome if they hadn’t had significant delay in language or cognitive development – and no accompanying learning disability.  

‘People on the autism spectrum will often choose their own way of talking about their autism, and some identify strongly with and will want to use the term Asperger.’

Below focuses on people who would traditionally have been diagnosed with Asperger syndrome.

What you can do

Autism is often called a hidden disability, and it may be even harder to see in people with high levels of verbal ability and intelligence. But they too can face huge difficulties and again, understanding is the key so that everyone can meet their full potential.

For instance, navigating social situations is difficult when you don’t understand the unwritten rules of society, and others don’t understand where you are coming from either.

Once you know you are working with someone on the autistic spectrum, there are many ways you can make their experience of healthcare easier. You can also advise people who are in a position to make reasonable adjustments for autistic people at school, college and university, in the workplace and in the community.

To start with, it is essential to be alert to the sensory needs of autistic people, says Simon Jones at Oxford Health NHS Foundation Trust. This is often a less appreciated aspect of autism, but a very important one. Sensory overload can make it very difficult for an autistic person to interact with you, he explains. Try to imagine holding a meaningful conversation while a fire alarm is screeching in the room, and you will get the idea.

Autistic people also tend to like predictability, he adds. ‘If you say you will meet them at 2pm and you know that outpatients tends to run late, make this abundantly clear so the person knows it can change. If you say you’re going to do something at a specific time, they’ll expect it.’

It also helps to give an autistic person some warning about what to expect, and to be honest about it. If something is going to hurt, say so and give them time to get ready.

Using clear, unambiguous language is helpful. Don’t assume that all autistic people face the same difficulties.

An autistic person may also benefit if you can provide a place to ‘chill out’ for a while when a situation starts to feel overwhelming.

What it really comes down to though, is getting to know and understand the individual, what they need and like, what they struggle with and where they excel. If you find yourself slipping into generalities,  remember that: ‘Once you’ve met one autistic person… you’ve met one autistic person.’ 


Stand in their shoes: Living with autism

Jorik Mol is co-convener of the autism experience group at Oxford Health NHS Foundation Trust.

Jorik urges professionals to recognise that autistic people have health needs different from those of people who are not autistic (or neurotypical). In particular, autistic people have significantly higher rates of anxiety, depression and suicide.

Understand that navigating the neurotypical world can be overwhelming when all your senses are on high alert, or even causing you pain. And it can be exhausting to go through extra mental steps to process every conversation.

At the same time, he says, autism is an identity that is discriminated against. These difficulties are compounded for some when autism intersects with additional aspects of their identity such as race, class, gender and sexuality.

Jorik echoes the view of the autistic community that autism is a normally occurring identity that, like gender or sexuality, can neither be treated nor cured. Stereotypes only serve to sustain inequalities.

‘We live in a society that is very much not made for us,’ he says, and it is difficult to find the right support ‘in a society that doesn’t understand us’.

Jorik leads a patient experience group improving this situation; it will direct the implementation of Oxford’s autism strategy. At the group’s launch in April, he said: ‘We want to improve the lives of people on the spectrum and we cannot do that without the voices of autistic people.’

Stephanie Nimmo is the mother of two autistic sons.

Stephanie’s two sons had a diagnosis of autism only in their teens. There were problems many years before that, she says, but ‘things really started getting pear-shaped in high school. It became obvious that this was more than anxiety, more than what’s going on at home.’

Even then, this happened only because ‘we put our hands in our pocket and got a private diagnosis’.

This was especially difficult for a family already stretched by caring for another disabled child with complex medical and educational needs, and a life-limiting condition. Indeed, for a long time, experts attributed the boys’ difficulties to the stress of this situation.

One of the boys finally got the support he needed, thanks to the SENCO at his school. ‘It came down to an individual, not the system, which had let us down,’ Stephanie says. The other boy went on to a special school, where he thrived. Along the way, they had very different needs with very different solutions.

Today, both are enjoying work and study in fields that they enjoy and excel in.

If Stephanie could give health professionals one message about supporting autistic children and their families it would be this: ‘Understand that we live it 24/7. Stand in their shoes and feel what it’s like. And don’t pull the professional shutters down – let us see your human side.’

Read Stephanie’s blog at wasthisintheplan.co.uk


Resources:  


References:

National Autistic Society. (2019) Autism facts and figures. See: https://www.autism.org.uk/about/what-is/myths-facts-stats.aspx (accessed 4 November 2019).

Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. (2016) Premature mortality in autism spectrum disorder. British Journal of Psychiatry 208(3): 232-8. 

Autistica. (2019) Suicide and autism. See: https://www.autistica.org.uk/what-is-autism/signs-and-symptoms/suicide-and-autism (accessed 4 November 2019). 

Cassidy S, Bradley P, Robinson J, Allison C, McHugh M, Baron-Cohen S. (2014) Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry 1(2): 142-7.

Czech H. (2018) Hans Asperger, national socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism 9(1): 29. 

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (5th edition). See: dsm.psychiatryonline.org (accessed 4 November 2019).

WHO. (2018) International classification of diseases for mortality and morbidity statistics (11th revision). See: icd.who.int (accessed 4 November 2019). 


Image credit | Getty

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